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The Golden West Chapter of The ALS Association helped secure resources and support for ALS research and care through our advocacy efforts, made possible by your generosity. Our ALS advocates, who represent 31 counties in California and the state of Hawaii, are essential at federal, state, and local levels to advance public policy initiatives aligned with our mission.
Joined with other leading patient organizations to appeal to Congress to provide at least $49 billion for the National Institutes of Health, a $3 billion increase over 2020, to expand investment in ALS research.
Asked Congress for $50 million for the FDA to fund clinical research to benefit people with ALS, and to fund a study by the National Academies of Science and Medicine to help coordinate federally funded ALS research.
Advocated for the enactment of ACT for ALS, legislation that supports access to experimental treatments and provides the FDA with additional research capacity and public-private partnerships to speed development and approval of new treatments. It was signed into law on Thursday, December 23.
Maintained funding levels for the ALS Research Program (ALSRP) of $40 million awarded by the Department of Defense (DOD). Studies funded by the DOD, as well as the VA and NIH, have found that people who serve in the military are up to twice as likely to develop ALS as civilians regardless of which branch, era of service, or whether they served during war or peace time.
ALS advocates worked to preserve and increase federal resources for ALS research, including $10 million in continued funding for the National ALS Registry/Biorepository at the Centers for Disease Control and Prevention (CDC) to identify genetic and environmental factors for ALS, provide support to researchers, and promote access to clinical trials.
Building upon 15 years of ALS advocacy, the State of California renewed multi-year funding for the Golden West Chapter's evidence-based wraparound model of care that helps people live longer and better with ALS, while also fueling the search for effective treatments and cures.
Joined with our partners in calling on governors in all 50 states to use their authority to waive state licensure requirements to enable people with ALS to use technology and telemedicine approaches to visit doctors across state lines.
Supported ongoing efforts to make sure people with ALS are able to have expanded and permanent access to telehealth consultations with clinicians and medical professionals.
Advocated for a series of policy actions to help the FDA accelerate development and delivery of effective therapies. Worked with the House and Senate to appropriate $1 million for a study to identify and recommend actions for the public, private, and nonprofit sectors to help people with ALS live longer and with a better quality of life.
Requested $5 million in new funding for the Orphan Products Grants Program (OPGP) at the FDA.The program was approved by the House to fund ALS clinical trials and invest in regulatory science to speed the approval of ALS treatments.